one must still have chaos in oneself to be able to give birth to a dancing star

Friday, February 6, 2009

Thank you and . . . .

Words cannot express how unbelievably grateful I am to the commenters to my previous post. You each gave me such comfort, and when I needed it. It's even more extraordinary to get comfort from people I have not had the pleasure to meet in the flesh (I was going to say "met in real life," but that's not appropriate, since this stuff is as real life as I ever want to be). Thank you. I got a little teary eyed, and felt surrounded by wisdom and the permission to grieve. Which I so desperately needed. And more of which you will unfortunately have to read about.

And now I'm changing the subject and asking a favor. Which is probably crappy of me since you were so incredible before, but that's what you get for being incredible. Requests to take your awesomesauce-ness to other venues and do for them what you did for me. . . .

I have a request, for anyone reading to provide comfort to another family, the mother of which is a reader of this blog.

There is a boy, a few months younger than Brody, who has been diagnosed with Vacterl, and has significantly more medical issues than Brody.

I read the mother's update last night and became . . . pissed off.

Let me back up. At this point in time, the parents of this darling, and adorable almost 2-year old boy have to make some decisions about certain treatments for certain conditions. These decisions will affect the boy's quality of life and longevity. As I read the updates, there is no treatment that does not risk both.

The boy almost died a few weeks ago, because he became septic. And this is why now is the time that the parents have to make some hard, heartbreaking decisions to deal with his multiple-organ, multiple-system, chronic, life-threatening conditions.

Then we get the update. And the mother informs us that people are actually criticizing them for the choices they are making. One apparently even told them they were "playing God" and to pray for Jesus to intervene in the health of their son, instead of, you know, providing medical care for the boy. Some of the messages are equally. . . lukewarm. . . in their support of this family. Giving un-asked for advice, and questioning the family's right to make these heart-rending decisions.

Naturally, I'm almost as enraged and not nearly as hurt as the mom of the little boy. "How dare they" is a phrase that's been running through me quite a lot. Especially since, if Jeremy and I hadn't "played God" and arranged for Brody to have surgery at 48 hours old, and again at 6 days old, he wouldn't be here at all.

Look, I know it's not pleasant to read about sick kids. Some days I don't read updates from anyone because, well, it's too bloody depressing and sad and I just can't do it. And so, I'm not asking you to read all about this child, and get all involved with the details of what they're going through.

I'm asking you to just post a message in support of them. This is the link to the guestbook - it's not all involved like Brody's carepages with passwords etc. Just click on the link to the guestbook. I know the mom would appreciate all the extra prayers, or good thoughts, you could spare for them right now.

Yes, we did win that vacation from Homeaway.com

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